Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

negative ttg ab, marsh 1 biopsy

amlong73
 Share

Recommended Posts

amlong73 Newbie
amlong73
Posted

My  15 year old daughter while on a normal gluten diet had a ttg ab test of 1. Her immunoglobulin a was 160. She had a biopsy done, and was confirmed to have Marsh 1. Dr diagnosed her with celiac disease. She was having symptoms of acid reflux, stomach aches, nausea and diarrhea. None of these symptoms improved on a gluten free diet. Her ttg-ab test 4 months later was still a 1. She was finally diagnosed with a low functioning gallbladder and will have surgery to remove. I still question her celiac diagnosis, and was wondering if it was to soon to say she has celiac. Dr. still says a marsh 1 is celiac. Is she correct? 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted
(edited)

Maybe your daughter is like me.  I never test positive to the TTG tests and I had a non-functioning gallbladder.  How non-functioning (percentage)?    What was her HIDA scan?  I ask because I think if my celiac disease was diagnosed sooner, I might have been able to save my gallbladder.  Mine was at 0% and was infected.  But I suffered starting at age 16.  I would have annual attacks.  And then my GB would work just fine until one year, it just stopped working. It caused me a lot of problems for about six months.   Just a non-medical theory, so talk to your GI.  I know she went gluten free, but the diet has a very steep learning curve.  It is why most celiacs report taking a year or longer to heal.  Even though in theory the GI tract can heal fast, but we certainly do not live in a bubble.  
 

Know that some celiacs are seronegative.  Your daughter could be one of them.  I test positive to only the DGP IgA test.  Had them all, many times.  Why?  None of my doctors know.  My research shows this can occur in the very young and the very old.  Doctors use the TTG because it catches most celiacs, but not all and it saves money......😕

Marsh Stage 1?  Correct?  That is because a pathologist reviewed those tissues and her GI concurs.  She can have both celiac disease and a non-functioning gallbladder — like me!  
 

 

Edited by cyclinglady
Scott Adams Grand Master
Scott Adams
Posted

If I were you I would get a genetic test done on her to see if she carries the genes necessary for her to have celiac disease. A negative blood test with a mild positive biopsy would also leave me with many questions.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,330
    • Most Online (within 30 mins)
      7,748
    TamSta214
    Newest Member
    TamSta214
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • somethinglikeolivia
      Am I celiac or not?

      By somethinglikeolivia · Posted

      Responding to both of your replies: thank you so much!! That makes a lot of sense and helps me feel better about it - I really appreciate the clarification and recommendations. You guys have been very helpful and this site is a gift. Thanks again! 
    • trents
      Am I celiac or not?

      By trents · Posted

      I think giving attention to the main sources of exposure such as direct consumption of gluten and gross cross contamination with reasonable attention to handwashing and thorough counter top cleaning and dishwashing should cover cross contamination issues. The biggest precautions would be eating in restaurants and at other's homes. Don't get paranoia over it and don't make trouble where there is none. As far a what you communicate with your physicians, just tell them what you know. Strongly positive antibody tests, negative biopsy, positive symptoms when consuming gluten with clearing of symptoms when gluten free.  
    • trents
      Am I celiac or not?

      By trents · Posted

      Occasionally we do see anomalies where celiac antibody tests are positive but biopsies are negative, and even visa versa. Sometimes, damage to the small bowel lining is patchy and unless numerous samples are taken from various areas, the damage can be missed. So, there's that issue as well. I think in your situation, the tell-tale indicator is the difference in symptoms between when you were off gluten and when you were consuming it.   
    • somethinglikeolivia
      Am I celiac or not?

      By somethinglikeolivia · Posted

      Okay, that makes sense - so based off of the 90% odds that it is positive, it’s worth switching to fully gluten-free? How strict do I need to be with cross-contamination, handling, etc. Is it something that can go by feel, for instance if I feel okay making my family sandwiches and handling the bread as opposed to eating it, or is it something that is causing silent damage even if I feel fine? Also, do I make it clear to my rheumatologist and other medical providers that I am celiac? Or will they veto that due to negative endoscopy? Thanks again for the help!
    • Scott Adams
      Am I celiac or not?

      By Scott Adams · Posted

      If you look at the article that I shared you will notice that "The test is estimated to have a sensitivity of approximately 90%, which means that it correctly identifies 90% of people with celiac disease. It also has a high specificity of around 95%, which means that it correctly identifies 95% of people who do not have celiac disease," so your results indicate that you very likely have celiac disease, especially if you also have symptoms while eating gluten that go away when you stop eating it (although many celiacs don't have obvious symptoms).
×
×
  • Create New...